Caregivers of children with autism spectrum disorder (ASD) may find it difficult to feel a sense of control and to cope with the overall physical and emotional demands of caring for their child. While caregivers are able to successfully cope with a high level of stress, there are limits to their resources and abilities to cope over time. Genetic counselors working with affected families may be able to help parents more effectively manage stress related to the disorder. Few short-term interventions have been reported in genetic counseling yet implementation of evidence-based examples may be achievable. This study aimed to assess the feasibility of a coping effectiveness training (CET) intervention designed to enhance coping self-efficacy (CSE) among caregivers of children with ASD, with the eventual goal of translating this intervention into genetic counseling practice. A randomized treatment-control design was used to investigate the feasibility of an intervention using CET among caregivers of children with ASD. The primary outcome was the feasibility of the intervention; the secondary outcome was improvements in CSE in the intervention group as compared to the control group. Caregivers were recruited and randomized into the treatment (n=15) or control (n=13) groups. Of these, 22 completed the study (retention: 78.6%). The intervention was highly feasible; most caregivers found the CET helpful, practical, useful, and relatively easy to attend. The treatment group demonstrated significantly increased CSE from pre-intervention to post-intervention (p=0.02). Between group differences were not significant when comparing the pre-post changes. We provide preliminary evidence that CET may be beneficial to caregivers of children with ASD. The results of this feasibility study support development of a phase II study of this intervention in a larger cohort, aimed to be implemented into a genetic counseling setting.
This is a preview of subscription content, log in to check access.
Athens, B. A., Caldwell, S. L., Umstead, K. L., Connors, P. D., Brenna, E., & Biesecker, B. B. (2017). A systematic review of randomized controlled trials to assess outcomes of genetic counseling. Journal of Genetic Counseling, 1–32. https://doi.org/10.1007/s10897-017-0082-y
Baty, B. J., Trepanier, A., Bennett, R. L., Davis, C., Erby, L., Hippman, C., et al. (2016). Developing a model of advanced training to promote career advancement for certified genetic counselors: An investigation of expanded skills, advanced training paths, and professional opportunities. Journal of Genetic Counseling, 25(4), 625–634.
Betancur, C. (2011). Etiological heterogeneity in autism spectrum disorders: More than 100 genetic and genomic disorders and still counting. Brain Research, 1380, 42–77.
Biesecker, B., & Erby, L. (2008). Adaptation to living with a genetic condition or risk: A mini-review. Clinical Genetics, 74(5), 401–407.
Carter, M., & Scherer, S. (2013). Autism spectrum disorder in the genetics clinic: A review. Clinical Genetics, 83(5), 399–407.
Center of Disease Control and Prevention. (2016). Autism spectrum disorder data and statistics. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html.
Chesney, M., & Folkman, S. (1994). Psychological impact of HIV disease and implications for intervention. The Psychiatric Clinics of North America, 17(1), 163–182.
Chesney, M., Folkman, S., & Chambers, D. (1996). Coping effectiveness training for men living with HIV: Preliminary findings. International Journal of STD & AIDS, 7(suppl 2), 75–82.
Chesney, M., Chambers, D., Taylor, J., Johnson, L., & Folkman, S. (2003). Coping effectiveness training for men living with HIV: Results from a randomized clinical trial testing a group-based intervention. Psychosomatic Medicine, 65(6), 1038–1046.
Chesney, M., Neilands, T., Chambers, D., Taylor, J., & Folkman, S. (2006). A validity and reliability study of the coping self-efficacy scale. British Journal of Health Psychology, 11(3), 421–437.
Christensen, D. L. (2016). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2012. MMWR Surveillance Summaries, 65, 1–23.
Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2015). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162.
Eijzenga, W., Aaronson, N. K., Hahn, D. E., Sidharta, G. N., van der Kolk, L. E., Velthuizen, M. E., et al. (2014). Effect of routine assessment of specific psychosocial problems on personalized communication, counselors' awareness, and distress levels in cancer genetic counseling practice: A randomized controlled trial. Journal of Clinical Oncology, 32(27), 2998–3004.
Feinberg, E., Augustyn, M., Fitzgerald, E., Sandler, J., Ferreira-Cesar Suarez, Z., Chen, N., et al. (2014). Improving maternal mental health after a child's diagnosis of autism spectrum disorder: Results from a randomized clinical trial. JAMA Pediatrics, 168(1), 40–46. https://doi.org/10.1001/jamapediatrics.2013.3445.
Goodwin, P. J., Leszcz, M., Quirt, G., Koopmans, J., Arnold, A., Dohan, E., et al. (2000). Lessons learned from enrollment in the BEST study—A multicenter, randomized trial of group psychosocial support in metastatic breast cancer. Journal of Chinese Entrepreneurship, 53(1), 47–55.
Gray, D. E. (2006). Coping over time: The parents of children with autism. Journal of Intellectual Disability Research, 50(12), 970–976.
Hastings, R., & Beck, A. (2004). Practitioner review: Stress intervention for parents of children with intellectual disabilities. Journal of Child Psychology and Psychiatry, 45(8), 1338–1349.
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629–642. https://doi.org/10.1007/s10803-012-1604-y.
Kennedy, P., Duff, J., Evans, M., & Beedie, A. (2003). Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. The British Journal of Clinical Psychology, 42(1), 41–52.
Lai, W. W., Goh, T. J., Oei, T. P. S., & Sung, M. (2015). Coping and well-being in parents of children with autism Spectrum disorders (ASD). Journal of Autism and Developmental Disorders, 45(8), 2582–2593. https://doi.org/10.1007/s10803-015-2430-9.
Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer Publishing Company, Inc.
Lee, G. K. (2009). Parents of children with high functioning autism: How well do they cope and adjust? Journal of Developmental and Physical Disabilities, 21(2), 93–114.
Lewis, K. (2008). Caregiver adaptation to pervasive developmental disorders. JHU/NHGRI Genetic Counseling Program Master's Thesis.
McConachie, H., & Diggle, T. (2007). Parent implemented early intervention for young children with autism spectrum disorder: A systematic review. Journal of Evaluation in Clinical Practice, 13(1), 120–129.
McInerney-Leo, A., Biesecker, B. B., Hadley, D. W., Kase, R. G., Giambarresi, T. R., Johnson, E., et al. (2004). BRCA1/2 testing in hereditary breast and ovarian cancer families: Effectiveness of problem-solving training as a counseling intervention. American Journal of Medical Genetics Part A, 130(3), 221–227.
McStay, R. L., Dissanayake, C., Scheeren, A., Koot, H. M., & Begeer, S. (2013). Parenting stress and autism: The role of age, autism severity, quality of life and problem behaviour of children and adolescents with autism. Autism, 18(5), 502–510.
Miodrag, N., & Hodapp, R. M. (2010). Chronic stress and health among parents of children with intellectual and developmental disabilities. Current Opinion in Psychiatry, 23(5), 407–411.
Nguyen, C. T., Fairclough, D. L., & Noll, R. B. (2016). Problem-solving skills training for mothers of children recently diagnosed with autism spectrum disorder: A pilot feasibility study. Autism, 20(1), 55–64. https://doi.org/10.1177/1362361314567134.
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103.
Peek, G., & Melnyk, B. M. (2010). Coping interventions for parents of children newly diagnosed with cancer: An evidence review with implications for clinical practice and future research. Pediatric Nursing, 36(6), 306.
Phelps, K. W., Hodgson, J. L., McCammon, S. L., & Lamson, A. L. (2009). Caring for an individual with autism disorder: A qualitative analysis. Journal of Intellectual and Developmental Disability, 34(1), 27–35.
Plant, K. M., & Sanders, M. R. (2007). Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. Journal of Intellectual Disability Research, 51(2), 109–124.
Resta, R., Biesecker, B. B., Bennett, R. L., Blum, S., Estabrooks Hahn, S., Strecker, M. N., et al. (2006). A new definition of genetic counseling: National Society of genetic counselors’ task force report. Journal of Genetic Counseling, 15(2), 77–83.
Rogers, S. J., & Vismara, L. A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology, 37(1), 8–38.
Schaefer, G. B., Mendelsohn, N. J., Practice, P., & Committee, G. (2013). Clinical genetics evaluation in identifying the etiology of autism spectrum disorders: 2013 guideline revisions. Genetics in Medicine, 15(5), 399–407.
Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 38(5), 876.
Zablotsky, B., Bradshaw, C. P., & Stuart, E. A. (2013). The association between mental health, stress, and coping supports in mothers of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1380–1393. https://doi.org/10.1007/s10803-012-1693-7.
We thank the participants in this feasibility study who gave of their time and provided detailed feedback on the intervention. We also thank Trish Magyari for helping to train Christy Haakonsen Smith in the intervention.
This research was supported by the Intramural Research Program of the National Human Genome Research Institute, National Institutes of Health.
Conflict of Interest
Author Haakonsen Smith C, Author Turbitt E, Author Muschelli J, Author Leonard L, Author Lewis KL, Author Freedman B, Author Muratori M, and Author Biesecker declare that they have no conflict of interest.
Human Studies and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
Electronic supplementary material
About this article
Cite this article
Haakonsen Smith, C., Turbitt, E., Muschelli, J. et al. Feasibility of Coping Effectiveness Training for Caregivers of Children with Autism Spectrum Disorder: a Genetic Counseling Intervention. J Genet Counsel 27, 252–262 (2018). https://doi.org/10.1007/s10897-017-0144-1
- Autism spectrum disorder
- Coping skills